My Tovaxin Experience so far

A board to discuss Tcelna as a treatment for Multiple Sclerosis

My Tovaxin Experience so far

Postby hmtucker » Mon May 21, 2007 10:03 am

Howdy all,

I have been watching what has been going on here at the Tovaxin forum with great interest but have remained silent on how things are going for me in the study. I received my third injection last Thursday so here is how things have gone for me.

I went in for my first treatment on March 23 and the whole deal was uneventful. As a side note, it was very important that the doctor and the study coordinator not be present when the box containing Tovaxin/placebo vial was opened but they made no effort to prevent me from seeing the vial. So that indicated to me that the Tovaxin containing vial looked different from the placebo containing vial. I do a lot of cell culture work, so that was potentially a mistake on their part. For the first two weeks after the injection things were pretty much as usual with my symptoms. However in the third and fourth week I began to notice that my legs didn’t feel as heavy when I walked and my balance and stability seemed somewhat better. My wife noticed something about how I walked that was pretty interesting. My normal walking motion was to drive my heels down pretty hard and since we live in a house with a hardwood floor over a basement, I wasn’t going to sneak up on you without you hearing my pounding footsteps. But in the third or so week after the injection, I walked down the hallway and into the kitchen and she said that she didn’t hear me walking in like usual. From that point on, it was pretty clear that I was not driving my heels into the ground like I used to. There were several subtle things that were happening as well but the bottom line is that things certainly seemed different and were moving in a positive direction albeit slowly.

I went in for my second injection on April 20 and again things were pretty uneventful. As with the first injection, by the next day there was a barely noticeable red spot left over from the actual needle hole. My left hand has been a little sluggish since a flare up about a year ago and that was pretty evident in the “put the pegs in the hole” part of the EDSS. On the initial visit, the time difference was about 10 seconds slower for my left hand compared to my right hand even though I’m left handed. For this visit though my left hand time was only about 5 seconds slower than my right. Also, unlike the first injection visit, I could control my left leg better and when lying down I could move my heel from my knee to my ankle and back again with relative ease. In the few days following the injection, however, I felt pretty sluggish and a little achy. It was kinda’ like I felt on the day after a Betaseron injection. By day four, post-injection, those symptoms had gone away and I was getting back to the pre-second injection levels. I felt as if my stamina was on the increase as well as my mobility and balance. Several people who know I’m in the study remarked that I was moving much more fluid and stable than they had seen in a long time. I realize that that is not an unbiased opinion but I don’t think people who don’t know you well and don’t know you’re in a study are going to remark that you don’t move as crappy as you used to. My wife and I are building a new log house and we’re doing a lot of the work ourselves. Two weekends ago, my wife, 14 year old son, father-in-law and myself put down 800 square feet of yellow pine flooring. I was certainly able to do my share of the work and even though I would tire out, my stamina was much better than it used to be and if I took a 15 minute break I would be able to get back to work at the same level that I originally started at. By the time the weekend was over, I experienced something that I had not experienced in a long time. My muscles were sore! It used to be that my nervous system wouldn’t work long enough for my muscles to get worn out and sore. But, since my stamina was better, I was able to work long enough to actually wear the muscles out. The tingling in my hands and feet was somewhat better and the sensations in my hands and feet were much better. Sensations are still “fuzzy” but better.

I went in for my third injection last Thursday , May 17. As before, only a small red mark the following day so again no injection site reaction. My left hand “peg in the hole” time was down to about 2 seconds slower than my right. The day after the injection, I was not nearly as sluggish and a little less achy than I was after the second injection. By the next day, I was back to pre-injection levels and Sunday was a great day. We put down the last 400 feet of flooring on Saturday and Sunday and yes I’m sore!

To wrap this long post up, I’m convinced that things are moving in a strong positive direction for me. I don’t think I’ll enter a marathon anytime soon but I, and the people close to me, think I’m doing significantly better.

Take care,
Mike
User avatar
hmtucker
Family Elder
 
Posts: 100
Joined: Tue Nov 28, 2006 4:00 pm
Location: Versailles, Kentucky

Advertisement

Postby IHaveMS-com » Mon May 21, 2007 5:20 pm

Hi Mike,

I am pleased to hear some observations similar to my experience. Somewhere in my site, my brothers commented on my not thundering down the stairs. I hope you will keep posing your timeline. My timeline is old news. It is nice to hear about yours.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lars » Mon May 21, 2007 5:55 pm

Hi Mike,
Thanks for sharing. I'm glad for you (and all of us) that you are showing possitive results. I will stay tuned with great interest.
Lars
Lars
Family Elder
 
Posts: 433
Joined: Wed Mar 21, 2007 4:00 pm
Location: Durango, Co

Postby Lyon » Mon May 21, 2007 8:10 pm

Same here Mike. Thanks for sharing!
Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

The Tovaxin Study - Trials and Tribulations

Postby merlin26 » Mon May 21, 2007 9:48 pm

I live here in Portland, Oregon where they are currently holding trials of Tovaxin at St. Vincents hospital. I was the very first person to apply for this trial and I have qualified now twice. Yes, thats right, two times. The first time I tested positive for MRTC's and gave a pint of blood it was shipped off using DHL to Texas only to have it be held up by bad weather and thus "grandules" had formed and it was deemed unusable. To deem it unusable the first time around took of course 10 weeks. I was issued an apology and asked if i'd like to try again? I said "sure" and again I tested positive for the MRTC's and again I gave a pint of blood. Fast forward to 10 weeks later. The hospital gets a call from the lead study coordinator of Opexa to tell them that we're very sorry but "A technical error occured during the final processing of my blood". The hospital of course apologized as did Opexa and asked if id like to try once again? Now due to the fact that May is the last month they'll be accepting participants for the trial this will be the last time I will be allowed the opportunity to try to get the vaccine / placebo. At this point i'm extremely frustrated. Six months have already passed and in those 6 months I qualified for the study twice only to have things screwed up by shipping, and then by the lab. It's not fun having to give about 20 vials of blood up front to test for viruses and then having to give a pint each time. The only reason I continue to try is I really do believe in this product. I just hope Opexa gets its act together this time and gets things right. I dont know what the hell a 'technical error' means as they didn't choose to elaborate but I do know that my hope has been with this vaccine ever since I heard about it. I find it rather ironic how I was the first person to apply for the trial here in Oregon and now if the blood ever gets processed properly ill be the last person to receive the vaccine / placebo. Anyways i'm glad to hear about the rest of you who may have received it and are doing well. I hope to one day be right by your side. As of now though I am forced to once again anxiously await the results which won't be in for 10 weeks.
User avatar
merlin26
Family Member
 
Posts: 55
Joined: Thu Dec 09, 2004 4:00 pm

Postby IHaveMS-com » Tue May 22, 2007 9:26 am

Hi Merlin26,

It sounds like mother nature bagged your bag one time and Opexa bagged it the second time. On one of my trips to Houston (1,100 miles), while I was at the doctor's office waiting for my next treatment, they got a call that the wrong growth factor had been used on my vaccine, and I would need to return in 12 days.

I would consider my disappointing news to be less traumatic than yours, but I sure didn't like the hassle that a return visit would cause. I rationalized the event as this is a trial, and during a trial, the company not only learns about the potential of the drug, but also about manufacturing and logistical issues.

My hope for you is that 5 years from now this current series of frustrating events will only be a party topic of how Murphy's law happened during a successful trial that you participated in.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lyon » Tue May 22, 2007 1:01 pm

Hi Merlin,
The only reason I continue to try is I really do believe in this product.
You hit the nail on the head! It does get frustrating but keep in mind how much you believe in the product and how much you stand to benefit.

My wife was the first in Michigan and we went through many of the same frustrations you did, but as Tim said, this is a learning process and things do smooth out eventually.

My wife goes in for her second treatment tomorrow and the earlier frustrations are a distant memory.

I envy the people in the phase III now that we've ironed all the wrinkles out of the system!
Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby Loobie » Tue May 22, 2007 2:11 pm

Excellent to hear Mike. I am really glad to see you are seeing some improvement. Being in the study and not being sure which I'm on, it's good to hear a story where there are some good things happening. I had my last shot last week and am anxiously awaiting the extension.

Keep us posted. I'm a "thunder walker" too and my heels definitely feel it. When my wife is doing laundry in the basement she calls me "Tank" (I weigh a whopping 160 pounds). I'm glad you are getting around more gracefully. By the way, how is the Midwestern heat we've been having for the last few days been treating you?

Take care,
Lew
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby flipflopper » Tue May 22, 2007 2:31 pm

I also wanted to thank you for giving us an update on how you are doing Mike. I hope things continue to go well for you! :)


After I read your post Merlin 26, I felt grateful that everything has been going well for me, so far, with the Tovaxin trial. I really hope that there will be no problems in making your vaccine this time!


I will wait until my third vaccine to give everyone an update on how I'm doing. But, in case anyone is wondering, there is absolutely nothing to report for now.
User avatar
flipflopper
Family Elder
 
Posts: 183
Joined: Wed Nov 09, 2005 4:00 pm

Postby hmtucker » Wed May 23, 2007 5:10 am

Loobie wrote:By the way, how is the Midwestern heat we've been having for the last few days been treating you?


Lew,

Unless I get really hot, as in temps in the mid to upper 90's, the heat doesn't bother me too much. So, I can't really gauge if things are different now than they used to be. However, even working reasonably hard on the house when the temps have been up to the mid 80's I have been fine.

To the rest of you folks who have replied, thanks for the words of encouragement and I hope that everything goes well for you all in the study.

Mike
User avatar
hmtucker
Family Elder
 
Posts: 100
Joined: Tue Nov 28, 2006 4:00 pm
Location: Versailles, Kentucky

Postby IHaveMS-com » Thu May 24, 2007 8:52 am

Hi Mike,

This thread as in most threads has wandered from your good news to how things got screwed up for one of my injections and Merlin26's problems getting the vaccine made. Now we are on how heat effects us. I am glad to read that you are less effected by heat.

I start my comment by saying the hope for Tovaxin is that it will stop the attacks, any improvement is up to your body and future science. As my brothers have pointed out, I have seen improvements in many areas, but I have not improved as far as my ability to function when it is hot or when I get heated up exercising. This is a good example that people should not be looking for my response to the treatment. Everyone will have their own outcome.

Today's forecast is for humid conditions and a temperature of near 90. It would be foolish for me to plan any kind of outdoor activity for today. I workout 3 days a week and by the end of my routine, I have rubber legs and hang on to my mother in the parking lot. I know that my exercising has causes this and that it will go away in a few hours, always keep the 4-day rule in mind.

I seem to be posting a lot in the last few days. I do not like to post because my nerve ending light up. It is like being plugged into a wall socket. I have not had that sensation this week. Maybe that is a new improvement or maybe it is just the barometric pressure. Improvements are not something that I apply the 4-day rule to, but 4 days of something being better is moving in the right direction.

Since I will disappear again shortly, I thought I would mention why. Every month I go with my parents to visit my 98-year old grandmother in Chicago, no Internet access. As a side note, my Grandfather on my father's side will be 90 in September and is quite the computer geek and very good at PhotoShop. In June, I hope to spend a week in Wisconsin Dells, and I will be making another trip to Houston. My Grandparents have a summer home on the Wisconsin River. We get one TV channel and no Internet. Technology is wonderful, but not getting any bars on your cell phone is tranquility.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Lyon » Thu May 24, 2007 12:33 pm

IHaveMS-com wrote: My Grandparents have a summer home on the Wisconsin River. We get one TV channel and no Internet. Technology is wonderful, but not getting any bars on your cell phone is tranquility.
Not to get things even farther off topic, but I EASILY remember the days before the cell phone.

While I admit cell phones are handy if your car breaks down in the boonies in sub-zero weather, it saddens me that now and in the future, kids will never know what it's like, or at least will never fully appreciate being "out of contact". I LIKED going fishing knowing that no one could get in touch with me and didn't feel a bit guilty about it and in fact that was a large part of the enjoyment in "going fishing".

Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Postby IHaveMS-com » Thu May 24, 2007 5:22 pm

Not to get things even farther off topic


Hi Bob,

Maybe this thread should be re-titled miscellaneous thoughts that pop into my head.

I am young enough to remember the bag phone that my parents made me take with whenever I went out with the car. With all of the cell towers, the only way that you won't be bothered by the phone ringing when you go fishing, is if you leave it home.

My Grandmother still has a rotary dial phone, and I enjoy using it.
Best regards, Tim

In 2001, my family helped fund the startup of Opexa. My father served on the Board of Directors of PharmaFrontiers, now Opexa Therapeutics, until the company completed a successful 23-million dollar financing round.
User avatar
IHaveMS-com
Family Elder
 
Posts: 213
Joined: Tue Jun 07, 2005 3:00 pm

Postby Loobie » Fri May 25, 2007 4:36 am

I remember the days of business travel before the cell phone (and my first one was a bag phone!). I used to drive to Detroit every Wednesday for a standing meeting and I used to have a nice leisurely drive where I would listen to music and not have to 'work' in the car. Then the cell phones and beepers came along and people at my company would actually expect me to get things done when I was on my way up there. They truly have made it harder to relax when you manage a company with more than one shift; you are always waiting for the damn thing to ring when you are at dinner or anywhere. I'd love to give mine the boot.
User avatar
Loobie
Family Elder
 
Posts: 2196
Joined: Mon Sep 11, 2006 3:00 pm
Location: Dayton, Ohio USA

Postby Lyon » Fri May 25, 2007 11:12 am

Absolutely Lew.

Those of us who remember the days before pagers and cell phones relish our occasional chance to "disconnect" from the world, whereas it seems that not being accessible 24/7 is what would make subsequent generations uncomfortable. It's their loss but it still seems sad.
Bob
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Next

Return to Tcelna (Tovaxin)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service